One seizure at a time.

I used to talk to my stepfather, Khosrow, about the death of the novel. I have always enjoyed reading novels and I always liked the feeling at the end of a book that I had gotten to know the characters, I somehow felt at the end of it that not only did I know the person I’d just spent so much time with (ann of green gables, ramona, the babysitters club, owen meany, betty and archie….) but that somehow they knew me too.

My friend Amanda used to write notes in her novels, and when you borrowed one of these books you would feel like you’d just shared a good part of life with her. Nuri once lost one of her books and felt like she had lost a piece of Amanda.

I have a memory I don’t trust, but when I remember those conversations with Khosrow they always happened on the boardwalk of a beach somewhere in the South Bay. The sun is shining but it is night, and so you see why I don’t trust the memory. I did not like short stories. He maintained that the novel was too slow and meandering for the 20th century (we’ve never had the conversation in the 21st) and the short story was a reflection of our times. He loved that at the end of the short story the reader was left with questions. I hated those questions. I wanted to learn something not be forced to come up with answers. I loved the fact that the novel as a whole is the important part of the story, that every comma did not need to be weighed as it must be in a short story.

So then, I have no excuse for not knowing that this last relationship was a short story. I find myself, as I have found myself at the end of hemingway’s short stories, full of questions, angry at the author, and disgusted with myself for having flitted away the invaluable minutes that could have been spent doing something worthwhile. And yes, I recognize the melodrama of these statements. I know that even the shortest story has added to who I am. (For Sale: Baby shoes. Never worn.) And that the introspection about the pure bile I have felt after those stories was worth whatever time I lost in reading the story.

Still.

I hate this. I hate the time I spent weighing commas and word choices when I could have been enjoying the passing of time. I hate that I am left with unanswerable questions. I hate that once more I was duped into reading what I thought would be a good story and ended up being the mental masturbation that most short stories are.

I was started on the chewable form. I can’t say it was love at first sight. Frankly, I didn’t think I needed anything, but no one else thought my seizures were harmless. I tried to fight it, refusing to take it, throwing tantrums- the way only 7 year old Asal knew how. But my dad, who has always spoiled me beyond reasonable means, would smash the tegretol into powder form and then mix it up with orange juice for me.

It took a long time for me to come to terms with having epilepsy, and in the early years I took my anger out on the meds. In high school one conversation with the school nurse went like this,

“Oh well sometimes I don’t have my pills with me, so I don’t take them.”

“Oh? You mean like they’re at your dad’s house when you’re at your mom’s?”

“No, like they’re downstairs, and I’m upstairs”

High school was also my first Tegretol overdose. How funny to think that there was a time when the mind dulling effects of anticonvulsants were not only unfamiliar but unknown to me. I remember that first time, an accidental double dosage had me unable to walk in a straight line, and my head was much heavier than I’d ever remembered it. Candy, the goth girl who sat in front of me begged me for some Tegretol and was quite eager to experience it for herself.

In college I forgot my meds during a road trip north. The wrath of withdrawal seizures was awful those nights. I had no idea why I was being punished so, I thought it spoke of the efficacy of Tegretol, not to the beauty of homeostasis.

And over the years other drugs came and went, adjunct therapy they’d call it. One doctor told me he didn’t think the Tegretol was doing anything. He said, “If you’re having 4 or 5 seizures a night, then we can’t say this drug is working.” He would have taken me off them, but he was grumpy once, when I called him for a prescription at 3 am, and I never spoke to him again.

By the end I’d graduated from chewable to tablet to extended release capsules. The extended release I never really needed. But I’d been complaining about side effects (which I didn’t have, never with Tegretol) for so long that it was hard to come up with something intelligent to say when I was offered a solution.

In the end, I didn’t want to let go, but it was between it and my skin and sometimes a girl’s got to do what a girl’s got to do.

So I’m taking Trileptal instead. Its a cousin of sorts. It doesn’t work as well. Not yet anyone. I’m adding all sorts of hippy dippy shit to it…valerian root and passionflower and something that claims to be straight GABA. And of course Atkins, going on month 3 of no carbs.

I have a big test on Friday. Its on Psychiatry. All of it. I should be studying…but maybe you’ve noticed, I’m not studying right now. In fact, I’ve barely been studying at all. I also haven’t been talking to friends back home, I haven’t been laying on the beach. I have, however, started smoking again.

I’m depressed. (Though technically, I think this is more of an adjustment disorder with anxiety.)

The rash came back. Its bad enough that I wake up with blood under my fingernails, because I scratch in my sleep. Also because I have so many scabs across my chest, it hurts to do almost anything, including swimming.

Thankfully my neurologist, my allergist, my dermatologist, and I have come up with a solution. I’m having an allergy reaction to my Tegretol. Yup the one I’ve been on for 22 years. Sorry fourth year in SJB ER. I guess you were right.

The issue, one of the many many many issues, is that I’ve been on a shitload of meds (neurontin, keppra, lamictal, depakote, tranxene, zonegran, topomax, and clonopin, for those who like to keep track of these…oh yeah and magnesium sulfate) and the only one that has much of an effect is the one that my body has decided is the enemy. I’ll be switching to a tegretol like drug, Trileptal, which may or may not control my seizures and may or may not get rid of the rash….as soon as the fiance can get to the pharmacy and ship the drugs here that is.

In the meanwhile, I’ve found it nearly physically impossible to take the tegretol. I’ve gone down to 800 mg (from my normal 1200) because ingesting poison seems distasteful to me, somehow.

And yes, boys and girls, my seizures are back. They are long, they are often, and I go around in a postictal daze for much of my day.

(In case you’re interested though, you take some hard cheese, I like asiago, shred it, add some garlic powder, put a tablespoon or two on a cookie sheet, throw it into an over that’s been pre-heated to 350, wait 5 or 10 minutes, until the edges are brown, then take them out, shape them if you want, and eat with whatever you want. Easy peasy. And less than 1 net carb)

I had a professor in medical school who told me, in front of a group of folks, that there is no stigma attached to epilepsy. She then went on to tell me (in the same conversation, in front of the same people) that being a doctor was a high stress position and that she wouldn’t recommend it to me. This conversation took place at the end of my 2nd year.

I can’t say her name without a string of expletives following it.

The other day I told a friend that it was amazing the grades that she gets and even more amazing how down to earth she is about them. The conversation went on from there, but in the end she told me that I shouldn’t worry about my lack of A’s, since after all, I have seizures.

There’s some truth to all this. Seizures suck. They suck the energy out of you, and after a half dozen seizures, the idea of doing anything but sleeping seems impossible. Until I think of the stigma.

God, I hate the stigma. Worse than the stigma is pity. And worse than the pity is the admiration. I’m a middling human being, as far as my successes in life go. I’m not terribly hard working. Really. Its terrible, but I’d much rather socialize than study.I shoot high with my ambitions, but none seem worth giving up lazing about and strengthening connections with people I adore.

I treasure my languor. And so when it’s excused away as some by product of misfiring neurons, it really pisses me off. And when my half-assed attempts at life are described as splendid, I want to spit!

Look, the seizures are better. Waaay better. Like can’t avoid the fact that this is working better. They last maybe half as long as they used to and I don’t have even a quarter as many as I used to.

Its amazing.

The diet sucks. Truly. Today was Christmas and I did not have any cookies. I did not have any ice cream. I had no stuffing. I had no gravy. I had some onion dip stuff, but that was a mistake. I had no blueberry cobbler. I had no lasagna. I had no eggplant dish. I had no tangerines. I wiped the tomato sauce off of my sausage.

Which was a bit sucky.

But none of it is worth having seizures. Life is sweet. Merry Christmas.

I used to know a girl who had been born with part of her arm missing. Watching her smoke a bong was amazing. Having never had the arm she was fluid in her movements and she looked fluid in all of her movements. She told me of an abortion she had had, and of what an asshole the doctor was. She said that as she laid on the table, in the emotional throes and physical discomfort that an abortion can bring, he began to question her about her arm. As she tried to prepare herself for what was about to come, he wanted to know about prosthetics…there are some great new ones on the market you know. Her natural reaction was to want to hurt him, but she managed to control herself.

I thought of her often yesterday. Not that my situation was that extreme, but I did want to shake my idiot doctor often. Actually, no, I wanted to shake the idiot 4th year medical student who was assigned my case. Why, oh why, oh why, did I go to the shittiest hospital in Caguas? Well, because I study there, and I was told it would be cheap. Blah.

I was in the ER for super duper antihistamines. (As I write this, the urge to throw a shoe is only overcome by my deep and abiding laziness.) My rash has spread, it has changed to a mottled brown, and then parts have gone back to its regular angry pink again. Did I mention parts have turned into acne. I look AMAZING.

Mr. 4th year had the benefit of having “post-traumatic seizures”. This made him a tad obsessed with my “condition” as he kept referring to it. When I told him I was on Atkins he said, “That won’t work”. And proceeded to tell me what works for him. He thought the rash might be due to my medication. When I told him I’d been on this particular combination for 3 years, he said, “it could be a delayed reaction”. When I told him I’d been on the main one for 22 years he shut the fuck up. Next he wanted to check my liver functions. I didn’t argue that one. He then told me HIS neurologist went to school here in PR, and did a residency at John Hopkins, he wanted to talk to her about my “case”. I told him my epileptologist TEACHES at the Mayo Clinic. He still thought I’d been prescribed the wrong drugs.

His attending looked like Jason Alexander, and though he wasn’t obsessed with epilepsy, he was pissy as all hell about my all my questions and I ended up walking out after he left me waiting for 45 minutes (after I got my drugs, which didn’t work, blugh)

This blog is dragging on.

The point is that I’m a third year medical student. I talk to patients, take histories, and offer opinions. If all my patients were as surly as I am, I’d be fucked. But I’m viciously aware of how little or how much doctors know at every step of medical education. Though, I’m willing to be taught by anyone, I prefer nurses. But when it comes to my own health, I certainly don’t want a med student working on me. Frankly, I don’t even trust last year residents. Hell, I don’t trust young doctors.